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Saturday, March 21, 2015

My favorite part of the day happens at noon. I pick Sammy up from her day care and drop her off to her afternoon pre-school at that time. All the kids in her day care get done with their lunch and are winding down, about ready to take a nap. Some are reading books. Some are singing together. Some are walking around. Some are taking care of their pee-pee and poo-poo business. Samaira could be doing any of the above activities when I reach there to pick her up. As soon as I enter the class, Samaira comes running to me and says “I love you, mumma,” patting my back as she says that. As if saying “I will take care of you, mum.”My sweet kid. Just as we are about to leave, Sammy’s best friend ‘C’ comes running to her saying “Sammy, no no no no.” Sammy responds with “Come here ‘C’. Give me a hug.” This starts an eternal hug routine in her class in which most of her classmates hug her before she leaves. All the kids in her class are so generous, so nice, so sweet.

My day is made pretty much everyday at noon.

It is nice to see that my kid is so loved and so loving. It is one of the proud moments for any parent - to see your child form bonds outside of immediate family. We want a strong family foundation. But the world around us is just as important, if not more.

Word Down Syndrome Day is celebrated on March 21st every year. It signifies 3 copies of the 21st chromosome in each cell. All together 47 chromosomes, as opposed to the typical 46 chromosomes. Chromosome 21 is the smallest human chromosome and it represents about 1.5 - 2% of total DNA in cells. This chromosome contains about 200 to 300 genes that provide instructions for making proteins, performing variety of roles in the body. It is these extra copies of genes on chromosome 21 that disrupt the course of normal development and cause the characteristic features of down syndrome. It is also associated with increased risk of certain health problems.

These, and several others, are medical facts about down syndrome. We, as parents, learn more about it. We absorb it. We try to understand it. We try to monitor it. We aren’t naive about it, just because we have an incentive to get hypothetical PHDs in all related medical aspects. We are not in denial about it either. It’s not like it won’t happen if we don’t think about it (unless of course you believe in that kind of stuff, which I do, but I understand its limitations too). So, it is there at the back of our minds. Always. Not taking any significant real estate until there is a reason to. It doesn’t blur our vision either. We don’t view her issues with a lens of its-because-of-down-syndrome. But we are aware. We aren’t pessimistic about it either. There is the belief, the faith that every challenge needs to met with an equal and opposite resolve of the will. Some battles we will win, and some we won’t. That’s alright. Fighting that battle is important. Not giving up is important. Seeing your child suffer is hard. At first you want to take the suffering away, because it is so unfair. Then you want your kid to make it through. Be strong. Be resilient. Survive it. Even if it is something as simple as a cough or a congestion. Health is important and we realize it all too well.

Samaira needs more effort and time in completing her tasks, so she does ask for patience. But as far as attitude and expectations are concerned, they are no different. Our expectations are that both our kids are nice people, give their 100%, not give up, learn to rise from ashes, find the meaning of life - you know, the simple business as usual kind of stuff. No biggie. Jokes aside. We are not living our lives with any mission. There isn't a mission to do something or achieve something. We are attempting to live happy lives. It really is that simple.

We are so blessed to be surrounded with so many lovely people. I say it a lot. I will say it a lot more in future. Our ecosystem is kind of mind blowing. Our family and friends rock our world by being such nice and loving people. It sounds quite basic but that’s all you need. That’s all you sometimes cannot find. So we don’t take it for granted. Not at all. We appreciate and value every ounce of that goodness. Everyone around us has a very yes-you-can attitude toward Samaira. Everyone around us loves her unconditionally. It almost gives me a heartache to see how good everyone is. It has spoiled us so much that sometimes we don’t remember that there is a world outside of our world, and it may not be so kind. I honestly don’t know how to prepare for it. But for now, we are basking in the warmth and the company of the people we know.

I remember reading every article, every journal, every blog, every newsletter related to down syndrome in the first year and half of Sammy’s life. We wanted to make sure we were doing everything. We didn’t want to miss an opportunity. It thankfully did not lead us to forgetting to live her childhood. Sammy made sure we enjoyed her every mood, her every look, her every babble, her every toddle. But we are not as crazy into read-everything-out-there mode anymore. We have learned to relax a little. We have realized that the big ocean of information is endless. We will never know it all. We don’t have to know it all. All we have to try to know is Sammy. So we do that.

We only have three years worth of information about down syndrome. We know nothing more. Everything else is a speculation. All our fears, all our optimism, all our planning - is that for an absolute unknown that cannot be predicted. We fear nonetheless. We are optimistic nonetheless. We plan, only somewhat. But on this day, on the world down syndrome day, as I think about spreading awareness about down syndrome - I struggle a little. I am not sure what to tell. We know only so much. So little.

We know of this three year old girl.

Who has beautiful eyes.

Who loves food. Mostly carbs.

Who hates vegetables, from the bottom of her heart.

Who loves to sing lullabies to dolls\bears\people\invisible objects.

Who is on the shorter side, and so are her parents, and brother.

Who has a hole in her heart that can hopefully heal itself, but we aren't really sure.

Who had sleep apnea.

Who had an adenoidectomy and tonsillectomy.

Who has started stuttering over the last few months. It does worry us.

Who makes friends in a heart beat.

Who wins hearts in a heartbeat too.

Who deeply cares for her younger brother and also bosses him around plenty.

Who screams nooooooooo anytime we want her to do something she doesn't want, or sometimes screams for no good reason.

Who dances like no one is watching.

Who is averse to public restrooms and it can take up to 20 minutes of waiting and convincing her to go pee-pee in a public potty seat. We have even delayed a flight take off by 10 minutes because Sammy and I were in the restroom on the plane and not ready for takeoff. I am not proud of it. But it definitely makes me chuckle now.

Who loves to sing.

Who starts all her stories with “Once upon a time, there was a …” It could be a lion, a monkey, a table, a blanket. Whatever she feels like.

Who started going to preschool 4 times a week.

Who gets OT\PT and Adaptive therapy a couple of times a week.

Who has a best friend at day care called, ‘C’.

Who has parents, brother, grandparents, uncles, aunts, teachers, friends - who care for her very dearly.

So this is what we know about down syndrome. This is what we can spread awareness about. This is one angle of down syndrome. I wouldn’t say it is all fairies and lilies and rainbows. But it sure is a whole lot of fun.

If ever, ever, at all, you have any questions about down syndrome - please ask us. We may not know everything, but we may know some things. For the things we don’t know, we could find the answers together. The world will be a better place if we ask the right questions, have the right attitude, harbor the right vibes. I can’t take all the problems out of Samaira’s life. I don’t want to, anymore. I just hope that she will be stronger and people will be more aware.

Happy World Down Syndrome Day!

Wednesday, March 18, 2015

It’s been too darn long. I wrote a bunch. But it didn’t flow. So I didn’t post. If it doesn’t flow, it ain’t so. You know what I am sayin’. By the way, when I hear people pronounce a word by skipping the last ‘g’, I add that last ‘g’ in my head. I have to. I can’t take it. I don’t know why. I need that last ‘g’. Except for my name. I almost un-pronounce the last ‘g’ in my name. So weird. Anyway, now that we have this out of the way, I can think of the other important things in life.The thing is that I like writing when I don’t have to think too much. Too much thinking is a sign of an unsatisfactory writing experience for me. Not that writing is a mindless act. My mind is very much present when I write. Nor is it a thoughtless act. Because it very much reflects my thinking. But there is a fine (or wide?) line between too much thinking and free flowing thinking. Anyway. It has been way too long.My mind is all over the place right now. So there will most likely not be a beginning or an end to this post. In fact each paragraph could be its own thing. Like short stories. Really really short stories. I will allow that at the cost of my thoughts flowing freely, because we have established how important it is for my writing experience. There will be no continuity in this post. Disclaimer: Any continuity from one paragraph to the next is purely coincidental.So what’s new at our end, anyway? Siddharth and I have decided to not fight. Ever. It is our new-March resolution. If that is a thing. This resolution lasted for about 5 hours before one of us fought. Key phrase being one of us. In our arguments, we really have just one person fighting. And that is typically me. So in our couples fight, I am normally leading a one person fight. That is because while Siddharth thinks we are having a discussion, I feel like we are having an argument. Our thresholds are so different that more often than not we can’t even agree if we are having a fight. Anyway. Then we re-resolved to not fight. Until we fought again. The point is, we realized that kids are growing up. And our discussions (which could very well be about whether or not we are having a fight) impact our kids more than they impact us. So we are trying this thing called patience. How fancy? Siddharth is not new to it. I am not either. But we are not best of friends - patience and I. We have our differences. In any case, Siddharth and I are trying to not fight. We are succeeding until we fail. Not bad, I say. Funny thing is that now I sometimes try to remember what we used to fight about so much. And I must admit that I don’t even remember. Most of our arguments are silly. They are almost never about the content, and almost always about the tone. Ah, that tone. Siddharth obviously has none of these issues. He is a very simple person. No complicated onion layers to peel. What you see is really what you get. I, on the other hand, need a lot of understanding and a lot of to-be-understood aspect to my personality. I keep thinking of the saying “Understand before you want to be understood.” It is such a powerful statement. I really think this statement makes me a better person. No joke. Sammy & Rehan are turning me into a more cordial person. Whaat !!? Whaaat ?!Siddharth is really strange because he has a clear definition or standard of what is acceptable and what is not - in life, in general, for himself, for others. But even when people or circumstances don’t comply with his standard, he does not reject them. He accepts them without questioning. I, on the other hand, have a very post-modern view of the world. I am all about subjectivity. Individuality. Respect. There isn’t a right or a wrong. People do what they can, what they want. It is not for us to judge. But in spite of this seemingly liberal point of view, I can’t accept everyone into my teeny-tiny circle with open arms. I take time to build my circle. I don’t have a big circle, because I can’t accept without questioning. Or, at all, sometimes. I don't currently feel the need to cultivate this aspect of my personality. Not just yet, anyway. If I have to work on something, there will be a whole pandora’s box of things I could work on to better myself. I don’t think I will be prioritizing unconditional-acceptance-for-a-whole-bunch-of-people on that list. But I do, hugely, admire Siddharth for having this quality in him. In fact every time he displays this quality, I stare at him with my mouth wide open and a reaction of “Are you sure you are a human? From Earth?” - in the most positive way possible. I respect this quality in him so so much. It is one of the qualities that make him one of the best human beings I have ever come across.I would be lying if I say that Samaira and Rehan are the sweet angels who are a result of a new born unicorn fart. Because they are not. They can be extremely mischievous and wicked. These days I am a constant complaint-machine about Rehan sleeping at mid-night every night (please don’t judge us). He spends 3 hours going-to-sleep. But boy do these kids melt my heart or what !? I thank my stars that aligned so perfectly to give us these two kids. Specifically these ones. Not slightly different. This exact set. They bring so much joy in our lives. As much as I love to complain about them, I can’t imagine my life without them. Sammy gives hugs that are to die for. No, really. She could kill with her hugs. Rehan has the sweetest voice possible. So just when he has done something wrong, something that might result in me being mad times 10 and him basically being screwed, he will say “Mumma, IIIuvuuuu.” And my heart turns into an ice cream that has been out for too long - cold but totally melted.I like to see Sammy and Rehan interact. It is one of my favorite things about siblings. Interaction. They want the exact same thing, at the exact same time, for the exact same duration. Even though they don’t really want that thing. In other words, they fight a lot. In fact, every night I am thankful that they have survived each other. In one piece. But somehow Siddharth and I find so much happiness in just observing the kids doing what they do. Without interference. Unless one of them is going to seriously injure the other person, or themselves. We have a pretty high tolerance for such things. I would say that Siddharth and I are quite relaxed (totally a relative term, I get that) as parents. Not as a positive or a negative thing. More as a fact though. Unlike most parents, it doesn’t occur to us to discipline our kids when they are jumping on the couch. In some cases, we might actually join them in this monkey exercise. We do have boundaries. But the point is that our boundaries are somewhat stretched. And they are a moving target. So when our kids interact, and sometimes when it manifests as a chaotic its-mine-its-mine song, Siddharth and I look at each other and smile. Again, don’t judge. Of course there are times when Sammy will baby Rehan in the most adorable way humanly possible. There are times when Rehan is more concerned about Sammy than either of us. He wants Sammy’s attention, he wants to play with her. And it becomes cheesy-cheese overload in our household. I live for that. I would die for that.Samaira’s latest thing is being a teacher. She acts like this worldly person who knows everything and it is her duty to teach, especially Rehan. So you can always spot her holding a book and asking Rehan “Rehan - can you point at the umbrella buddy?” And when he does, she makes sure to follow it up with “Good job, buddy. I am proud of you.” Sure Miss Sammy. Anything for you. Rehan’s favorite thing these days is finding out who is happy and who is sad. And why. So he is on a repeat of “Mumma, are you happy?” “Is Elsa happy?” “Where is Anna?” “Is Anna happy?” You get the idea. These days it is a thing to diss the princess phenomena. I have been trying to figure out my point of view on it. So I wondered, why are super heroes ok and princesses not? I personally like Ironman just as much as I like Snow White. Well, maybe I like Ironman a tad bit more. I think it might be because of the opposites-attract phenomena. But that is besides the point. I personally am not against the princess phenomena, just like I am not against the superhero phenomena. I don’t take any specific pride in saying that Samaira likes Hulk. Just like I don’t feel the need to hide the fact that Rehan likes Elsa. The problem is not with princesses. Or with superheroes. The problem is that pink is for girls only and blue is for boys only. The problem is that princesses are for girls and superheroes are for boys. Which has now led to another problem. That princesses are not for girls. I really think both are for both. I personally don't want to decide or influence who my kids’ favorite should be. Equal opportunity. Equal privilege. In my mind it works both ways. I do understand parents trying to ensure their kids’ identity as being separate from any princess or superhero. It is one thing to like someone and another thing to want to be someone. Like really be that person. The only person I ever want Rehan to be is Rehan. The only person I ever want Sammy to be is Sammy. But if they want to pretend play with Hulk or Elsa - they can do whatever they want and I will be just as happy. Heck, they can make their own story in which Elsa is best friends with Hulk. Like say, Elsa froze Hulk when she first saw him because she was mad at him. Which made Hulk even more mad and he turned into this giant green man. Which scared Elsa. Until they learned more about each other and found out that they are more alike than different. And they became best friends forever. Not bad, huh. At this point, I will accept royalty cheques. Oh man, how I missed writing!